1. < Autoimmune Diseases

Sjogrens and dysautononia and mast cell activation

Posted by debbieguk @debbieguk, Feb 11 5:47am

Hi

Does anyone have the three conditions I have.

The only place i have seen these grouped together is by the Neurologist at Mayo clinic so I'm so happy as this explains my presentation totally.

However no one UK side sees these correlations so it's tricky to get help for the myriad of symptoms across my whole body

Wondering how you manage the nerve pain and any treatments you found worked for excess sweating ..

Which tests are needed for small nerve fibre issues I'm concerned re progression ie permanent damage vs reversible inflammation

Pots and fatigue

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 12 5:42pm
In reply to @becsbuddy "@debbieguk Good morning or maybe it’s evening for you! Welcome to Mayo Clinic Connect. We’re a..." + (show)
@becsbuddy

@debbieguk Good morning or maybe it’s evening for you! Welcome to Mayo Clinic Connect. We’re a large group of caregivers and patients who all work together to help everyone reach their best outcomes. Here are 2 discussions to get you going. And there are lots more!
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/&amp;
https://connect.mayoclinic.org/discussion/mast-cell-activation/
I found these discussion groups that you may want to look at and ask questions.
Since you went to Mayo, you must have access to their portal where you can ask questions. Did the doctors at Mayo Clinic give you a plan of care to share with your doctors in England?
Also, there is a branch of Mayo Clinic in London.
https://www.mayoclinichealthcare.co.uk/
Please look through the discussions and ask all your questions!

Jump to this post

The above link to the discussion about neuropathy doesn’t work. I put another one in a comment.

REPLY
moylandavis | @moylandavis | Feb 13 6:31am

Facebook has several groups that may be of help- mast cell disorders forum has over 38000 members… there are other groups…just run a search on fb and you will find them…there is even one for POTS! There are lots of members in the UK. You may find info on medical resources in the UK.
Per these groups, Mayo Clinic has turned away MCAS patients, but will see mastocytosis patients,
https://www.mastattack.org/ Is also an excellent website…
Any chance you r taking B6 supplement that maybe causing neuropathy…

REPLY
1 reply
debbieguk | @debbieguk | Feb 13 7:05am
In reply to @moylandavis "Facebook has several groups that may be of help- mast cell disorders forum has over 38000..." + (show)
@moylandavis

Facebook has several groups that may be of help- mast cell disorders forum has over 38000 members… there are other groups…just run a search on fb and you will find them…there is even one for POTS! There are lots of members in the UK. You may find info on medical resources in the UK.
Per these groups, Mayo Clinic has turned away MCAS patients, but will see mastocytosis patients,
https://www.mastattack.org/ Is also an excellent website…
Any chance you r taking B6 supplement that maybe causing neuropathy…

Jump to this post

Hi

Yes I am already on many groups just wanted to speak with others with the same presentation ...

Sjogrens and mcas causes small nerve fibre neuropathy. My B levels are normal and it's not diabetes . I'm looking for information really from those who have the same conditions to ideally share. I already know what I have.

REPLY
sophiaresop | @sophiaresop | Feb 13 12:03pm
In reply to @debbieguk "Thank you My daughters also look like they have familial Pots aka mcas so it's a..." + (show)
@debbieguk

Thank you

My daughters also look like they have familial Pots aka mcas so it's a lot to process

Jump to this post

Okay let me know if you can access the note(s) I added below!! I really hope it helps!! It’s for MAST CELL/POTS and SJOGRENS. It has orders, codes, explanations for each and simplified versions for each. I really hope you feel better soon ❤️
REPLY
1 reply
debbieguk | @debbieguk | Feb 14 3:26am
In reply to @sophiaresop "Okay let me know if you can access the note(s) I added below!! I really hope..." + (show)
@sophiaresop

Okay let me know if you can access the note(s) I added below!! I really hope it helps!! It’s for MAST CELL/POTS and SJOGRENS. It has orders, codes, explanations for each and simplified versions for each. I really hope you feel better soon ❤️

Jump to this post

Hi
Thanks

There's no notes attached that I can see here

REPLY
sophiaresop | @sophiaresop | Feb 14 1:49pm

Hmm it might be too big, may I email it to you please?? 😊

REPLY
debbieguk | @debbieguk | Feb 14 1:52pm

Hi that's kind but I prefer to keep it on here ideally

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